Remember what I said about advocating for your baby? Want to know why it’s SO important?
Maggie has been recovering from her tracheostomy and Nissen Fundo surgery. She’s experienced a LOT of bumps in the road from excessive desats, clamping down, withdrawals from drugs, and more. The doctors kept thinking something was wrong with her neurologically, so they ordered all the routine tests to rule things out. One of them was a head ultrasound.
Not a lot of things can be picked up from an ultrasound but what they could see is that Maggie had an enlarged ventricular artery right on her brain. This meant it was holding more fluid than normal. They decided to go ahead with an MRI.
I was okay with this. I wasn’t excited about her needing to be sedated during it, but the MRI would be able to show us things that other tests could not.
The MRI was pushed back by almost an entire week. It wasn’t deemed a “priority” so they took forever to put her on the schedule. Even the day that she was meant to go in, Maggie had already been fasting twelve hours - four more hours than she needed to be - before they finally took her down. They scanned her brain and lumbar.
Around the time we were waiting for the MRI, I had been asking the doctors to allow Maggie to get an abdominal ultrasound. For those who don’t know, Trisomy 18 children are at higher risk for certain cancers called Hepatoblastoma and Wilm’s tumor. It’s advised to get a regular ultrasound screening and AFP level check every 3 months until the age of 7.
But the doctors thought I was crazy.
Two different times they told me no and that it wasn’t necessary. Finally, I asked a fellow T18 mom about it and she showed me where to find printed medical literature that proves that our children need routine screening. I printed out the literature and took it to the hospital with me the next day. I asked for the doctor, and when she came in, I told her I wanted Maggie to get an abdominal ultrasound and I had proof as to why she needed it.
She didn’t even question me. She ordered the ultrasound for the very next day.
We got the results for the MRI and the ultrasound at the same time. I had been at the hospital that entire day WAITING for HOURS for the doctor to finally come in and tell me the results but nothing. It was SO frustrating. Finally, I had to leave and my husband took my place. He was only there for about two hours and the entire time he was asking the nurse to fetch the doctor. Still nothing. He had to leave and my mom (who was staying overnight with Maggie) was there when the doctor finally came in. We were put on speakerphone while at home.
On the MRI they saw that Maggie had suffered from two strokes. A blood clot was found on her brain and another on her spleen. The enlarged ventricular on her brain was a sign that her brain was developing slower than the normal rate. This was something they simply needed to monitor over time. We were devastated nonetheless.
The abdominal ultrasound showed that one of her kidneys had not fully developed while in utero and that the other one had a perfusion of some sort but they didn’t know what it was. Her liver was hazy, but technically alright and there were no signs of cancer growth. And there was a small cyst on her left ovary.
These were really difficult pills to swallow. To think what would’ve happened in the future if we hadn’t found these things…
Fast forward a day or two and Maggie received a test called VCUG which uses an x-ray and a dye released through a urinary catheter to see what level the kidneys have in something called “reflux”. The most severe is grade 5 - on her left kidney she has a grade 3 and that perfusion was a kidney stone. On her right she has a grade 2.
A leg ultrasound was also ordered and they found another blood cot right where they had placed a central line IV. The IV came out the next day.
Our Trisomy kiddos sure love to surprise us, but it’s never easy. I just want all this pain to end for my baby. If I had one wish in the world it would be to take all of her pain away.
But this also shows why advocacy is so incredibly important. I can’t stress that enough.
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